Would Someone Like To Coment On Confusing Genetics Results?

[keepinthefaith]

Got test results back for my wonderful, yet mule-like teen daughter.

Her genetics results read exactly as written:

HLA-DQB1* -- 03(DQ7)

HLA DQB1* -- 05(DQ5)

HLA-DQ2 -- Negative

HLA DQ8 -- Negative

I can tell that DQ 2 and 8 are negative, obviously, but don't understand the first two parts. Can't get doc to return my call. She's busy. The NP who released the records to me said they are "completely normal." However I read about DQ7 and others indicating celiac.

She is a tough case with one probable dermatitis herpetaformis episode that was too healed to biopsy by the time we got to the dermatologist.

Bloodwork with TTG antibody, gliadin antibody and serum IGa all in range.

She has eczema, severe scarring from the suspected DH, once had a skin test "wheat allergy" in younger childhood. No GI symptoms.

Her enterolab stool test was positive, however, as was her mother's and sister's ( sister has very short stature and is very petite, despite tall relatives. She has a brother with autism who is gluten-free. I, mother, have many many gluten intolerant symptoms. Her bro and I follow gluten-free diet.

I am just looking for something that I can tell her that proves "Yes, you have to go on this diet."

She is 14 and a skeptic to enterolab, as she heard her conventional GI doc speak badly about stool testing, saying how terrible it is, and such. Won't connect her skin problems to gluten problem, won't connect her low energy, and severe anxiety/panic attacks to it either.

She's comparing what she has to my serious "potty problems" and her brother's autism and obvious constipation and regressions when he eats gluten.

Is there something I can tell her based on this DQ7 DQ5 stuff?

I cross-posted this over in the DH forum, but not sure many people would read it if they were not "into" DH.

Someone? Anyone? Bueller? Bueller?

Thanks in advance!

[woolwhippet]

I'm a DQ7. It's taken me years to discover what was making me sick. Your daughter is lucky to have a heads up!

From the research I have done it seems that the DQ7 code's very similar to the DQ 8. I have this hunch (and I am not a scientist so if what I say is wrong please correct me someone!) but I hypothesize that it has something to do with the DR B1 type as well. I think if you are DR4-DQ7 (rather than DR 11 etc) THATS they key. I came up with this after examining the chart on this site:

Open Original Shared Link . I see a number of people posting here with DQ7 and given that it only occurs in 8.5% of the population it must mean something.

Fourteen is such a tough age. If you have been pushing the diet you might want to consider backing off the discussion and just clearing the house of gluten while also providing loads of tasty gluten-free stuff that teens will eat like muffins, pizzas, chilis. I wouldn't tell her you are doing this--you don't want a power struggle--just switch over naturally. I would show her the DNA evidence in a scientific way (no emotion) and tell her that you trust her to take care of her body (even though your mind is screaming the opposite!). It kills me to say it (because I wish I'd have known to stop gluten so young and because I have 2 kids of my own whose health I worry about) but I don't think you can make her do anything she doesn't want to do at this point. Your power is in providing and serving gluten-free food and your concession is not making her food choices outside your home into a power struggle. You want to stay on her side so that when she does figure out how sick gluten makes her she has you to turn to.

Good luck to you. I was a mule of a teenager myself...

[keepinthefaith]

Thank you for the post and for the link. I've gotten valuable information and encouragement from it, and from the two replies I received over in the dermatitis herpetaformis forum.

I guess I want to make sure that that result did indeed mean what it looked like it did -- that she had DQ7 show up, and find out what the heck DQ5 is..... and why they had a 3 and a 5 in front of them on the printout.

But I am doing my reading.

I saw DQ7 related to type 1 diabetes and some other pretty wretched stuff. Was I reading correctly?

I will be curious to see if a regular GI doc will see DQ7 and something to be concerned about, or if she will just see the negative DQ2 and DQ8 and say she is "fine," esp. with her negative bloodwork.

We go back in a few weeks.

Thank you for the teen advice! It's already 80 percent gluten-free household. I'll just be taking that last step and not offering gluten in the house. My hubby is great with it, and my very small daughter who just got her positive Enterolab results back is willing to go gluten-free, too. She wants to start on Jan 1st. So it's just my little mule opposing things for herself.

She gets terrible migraines, terrible anxiety, terrible rashes. To me it's a no brainer, but her logical process is 14, so.....

Thanks to you for your help!

[nora-n]

There are several ways to write DQ types, and one is teh gene and the other the expression (or cake mold and cookie)

DW7 is a subgroup of DQ3, and the other DQ types in DQ3 are DQ8, and 9 and 3.

DQ5 is a subgroup of DQ1 and is 5 and 6 and 1.

2 is 2,but there are two kinds of 2.

4 is 4.

(the beta alleles are: 0501 is DQ5, 0601 is DQ6, 05* is 1, 0202 is DQ2, 0301 is 7 , 0302 is 8, 0303 is 9 as far as I remember and the other 03* are DQ3)(the alpha alleles can vary but isforexample 0501 for the miost common DQ2 ) And there are DR types but that does not matter much here, but you can read about it if you are very interested.

Some DQ1 are very sensitive to gluten, and also have neurological symptoms. There are even two forums for gluten sensitivity and neuro symptoms.

The DH must not be biopsied on the rash, but on healthy skin close to the rash. The IGA may still be detected there for up to a year after going gluten-free so it is not too late probbly. In the rashes the IgA is used up so a biopsy there is useless.

Here an article where they say tehre are DQ7 celiacs (and a DQ1) Open Original Shared Link

nora

[keepinthefaith]

Thank you Nora and to everyone who replied. It makes a difference.

[dawnsusan]

I know it's been a long time since I posted on this thread, but for record-keeping purposes, for anyone doing research,

we went back to our GI and she said, "She's absolutely fine. No celiac. Her blood work was negative and the genes are negative."

She only cares about DQ2 and 8 and anyone who looked at any other genes was up a tree.

I'd rather be up a tree then up the river, if you know what I mean.

We're still gluten-free.

[fedora]

you originally posted this before I was on this board.

Each DQ number has variations within that number. So there are several variations of DQ7. SOME of those variations are HALF of the full celiac gene DQ2. So your daughter may have half of the gene.

I have half of the celiac gene and DQ5 too. I am definately gluten intolerant and have been since I was young.

I have scars on my hands from my rashes...that's nothing compared to how afraid I was when they were infected with strep and staph. And the loss of use I had in my hands from the rashes, at one point I couldn't use 3 of my fingers on my right hand.

Even if she won't listen to health reasons, maybe as a teenager she would be afraid of scarring!!!!

[luciddream928]

How does one find out if they have half of the celiac gene? I just got my gene test back and my results were:

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0502

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)

I guess that would be DQ2? But then again, there is something about having both DQ7 and DQ5 that make up the DQ2 in another form?

[nora-n]

YOu have most likely the trasn form of DQ2, check out the wikipedia page on HLA DQ, and HLA DQ2 and HLA DQ5 and HLA DQ7, and there is lots in the literature.

You were not tested for the alpha chains.

But certain alpha chains tend to follow certain beta chains, so you most likely have the most common alpha chains for your beta chains.

Kimball and some other labs test alpha chains, but I am not sure if they tell you ecaxtly what alpha chain you have.

I was tested and was just negative, I have no idea what genes I have. For that matter, I could even be trans DQ2 (but I think I am double DQ1 because of neuro symptoms, and wxtreme gluten sensitivity)

[luciddream928]

YOu have most likely the trasn form of DQ2, check out the wikipedia page on HLA DQ, and HLA DQ2 and HLA DQ5 and HLA DQ7, and there is lots in the literature.

You were not tested for the alpha chains.

But certain alpha chains tend to follow certain beta chains, so you most likely have the most common alpha chains for your beta chains.

Kimball and some other labs test alpha chains, but I am not sure if they tell you ecaxtly what alpha chain you have.

I was tested and was just negative, I have no idea what genes I have. For that matter, I could even be trans DQ2 (but I think I am double DQ1 because of neuro symptoms, and wxtreme gluten sensitivity)

Ahhhh there's the confusion. I didn't know about alpha chains. I looked up some stuff on wikipedia but couldn't understand it. I'll just keep reading, the forums are helping a lot. Thanks again.

[Nancym]

We don't know what every gene in the human genome does. Also, there are cases of celiac disease where the patient didn't have either of the two known genes for celiac disease. So doctors are being stupid if they think what little is known about genes explains celiacs completely.

I know there's another disease out there they just found 7 new genes associated with it, previously they only thought there was one.

[fedora]

hi Luciddream,

The two halves of the celiac gene DQ2 are DQ2 subtype 2(which has the beta part) and some of the DQ7 strains(which have the alpha part).

when DQ2 subtype 2 and the correct DQ7 strain are both present does it form the complete DQ2.5 gene. And of course DQ2 subtype 1 is the complete celiac gene.

You may have half the celiac gene. The HLA-DQB1 Molecular analysis, Allele 1 0301 is a variation of DQ7. And some of these have the alpha part of the celiac gene DQ2. To know you need to get the alpha part tested, which Enterolab does not do.

The DQ5 you have can not make the complete celiac gene with DQ7, only DQ2 subtype 2 can.

I have the half gene DQ2 subtype 2, you could not pay me enough to eat gluten again. so really it makes no difference to me that it is not a whole gene